Still kicking

Hello world of cancer blog readers; my apologies for being AWOL for quite some time here. I've been pretty busy plugging along...going to chemo, going to work, going nuts in my own head trying to figure out how to deal with all of this. 

Also busy making lists of things I have to get done before I die; who would have thought I (who ME?) would have been making THAT list.....refinance the mortgage, figure out how your spouse goes about getting your 401k, setting up that college savings plan I've been meaning to do for years now, write an obituary, join a church, find a lawyer, write a will, think of songs for my funeral, look into prepaid funeral plans, reach out to old friends.   It goes on and on.  It's a hefty list.  I'm pretty good at avoiding most of them.  All these critical things that need to be done.  I sleep better knowing they're on a list somewhere but I don't actually accomplish any of them.  I hunt for new recipes on Pinterest, I email friends, I waste time on Facebook, I read entertaining novels and avoid the cancer stuff I "should" be reading. 

Don't get me wrong, I'm still fighting to live.  But dying is never far from my thoughts.
It's a monumental thing to get your head around. It consumes me, and on bad days I wonder if I need some kind of therapy to help me with dying. On good days I wonder what if the doctors are all wrong, what if I can beat the odds and be that one that makes it.  Got good news this week, PET scan after round 3 reveals "favorable response to treatment".  That means we continue with rounds 4, 5 and 6.  I was ridiculously happy about this for a whole day.  Then I started having doubts....can I make it? I think I can, I think I can. I have no choice. I can do this.

The depths

OK, so I realize that the way to keep readers returning to a blog is probably not to post something randomly only every month or so.  So forgive me for doing just that, but actively writing about my situation is not something I can force myself to do very often. 

I am so tired of thinking, breathing, living every moment of my life with cancer at the forefront.
Every day when I wake up there is this slight moment when I think it was all a dream. 
Thank God it's not real.  Then the moment passes and it all becomes real again.   I feel a cold breeze on my bare head and neck and go "oh yeah, shit....I don't have any hair".
 
A lot has happened since I last posted; in a nutshell:
2 chemo cycles down, 1 more to go before another scan to see if this agony is even doing any good.
Somewhere in there, I went to the Mayo Clinic for a second opinion. Ironic that I live fairly close to the best health care in America.

I was impressed with the magnitude of the place and the knowledge there; but it was also a little depressing--seeing so many people there just trying to stay alive. Also felt a little bit like assembly line health care, but I guess it has to when you're dealing with that many people. Anyway, saw about 6 docs over the course of the day--medical oncologists, gynecologic oncologists, and liver surgeons. They all concurred with my current treatment plan, so nothing really new came out of it.

It did confirm the diagnosis, which is that I will likely never be cancer free again and even if I am, it will most likely be temporary.

Liver surgery not an option until they kill the cancer source, and pelvis exenteration surgery is not an option unless you want to live with stomas for the rest of your life. There is also a very high risk of life threatening complications with that surgery, so not the greatest option, eh?

It's hard to nail any docs down on how long I have to live, but what I am surmising is that it's between one (average) and five (top end) years. Hard to believe when I don't even really feel sick--at least not until I voluntarily sit in the chemo chair for 3 days. Only then do I feel like crap for about a week.

My daughter keeps saying they'll find a cure. I'm glad I raised an optimist.  I do try to stay positive, but also can't ignore it. I was always proud of being a "realist".  But you gotta have hope.  Without hope life is shit. Right now my foremost emotion is anger.  Why is this happening to me?  Why wasn't it caught sooner?  Why can we not just fix this so I can get back to my pre-cancer life.   In retrospect, it was a pretty damn good one.

This just keeps getting better and better

CT scan at the liver surgeon appt showed additional spots and "areas of concern" on the liver.
He consults with my oncologist and comes in to say surgery is not the best option.  Rather they'd prefer to proceed directly to "systemic" chemotherapy, so it can address ALL areas of cancer, even the ones we may not know about yet. 
Eerily quiet in the room.  This guy that I had high hopes for saving me has summarily dismissed me after talking to me and my husband for all of 4 minutes.  Done, gone.
Huge disappointment and I have trouble holding it together long enough to get out of there.

2 days later the oncologists office finally calls to say what chemo regime they're recommending.  Also having a port put in; chemo starting on Monday.  Waited until Friday for scheduling to call me back only to say that my insurance company hadn't pre-approved it yet, so it would need to be pushed to either Wed or the following Monday.  I feel like we're losing valuable time.  It's almost two months now since cellular activity was first seen on the PET scan. Frustrating doesn't begin to describe it.  Wondering if I should get a second opinion, but I don't have the energy.

Friday after the port surgery, I get around to telling most of my family and friends about the situation.
OK, so I guess I did learn something last time around :)  The communication plan is in full swing.
It feels good to not have to hide it anymore. Not that I'm so noble about it; just had to get it over with before my hair starts falling out...

Saturday after the port surgery, my chest and neck are so sore that I decide to take a couple of the pain pills my husband had leftover after surgery for bladder stones.  Suffice to say that I was out for the entire day....came around about dinner time, really pissed at myself for wasting half my weekend. Enough of this wallowing around.  I'm ready to move on with living.

Not the best news

I've been avoiding this for awhile now...its as difficult to write about as it is to talk about.
Gradually over the past week or so, the truth of the situation has slowly sifted through me.
Call me dense.  It's taken awhile. Apparently it's not like in the movies when the doc says "sorry ma'am, but you only have xxx months to live."  I had to read between the lines, make some inferences based on experience, and then do a little research on my own. 
Some phrases I remember:
"We don't have a crystal ball".
"We're going to treat it very aggressively, because of your age"  (which made me wonder....does that mean they DON'T treat older people aggresively?)
"You might want to make sure you have a will; take care of your children"
"Cancerous cells in the liver indicate that they're in the bloodstream, which means a new level of pervasiveness"
"Gradually, the chemo stops working"

I started this blog in an effort to inspire other women facing vaginal cancer.  I'm sorry if I'm not being very inspirational right now. This blog may take a new turn....
Basically right now I am just pissed.  Trying to stay positive, but I really have no idea what to do or how to deal with this.  Everytime I think about all the details I wanted to see watching my daughter grow up, all the life events that will happen without me, I am overwhelmed with sadness and panic. 

Seeing a liver surgeon on Monday. Wish me luck.

Recurrence

Sorry to drag out the end of that adventure....just realized it's been awhile since I posted the initial uncertainty.  The liver biopsy procedure has come and gone, and not surprisingly it was positive for cancer in the liver.  I got to see the spot on the ultrasound; it looked pretty little and harmless.
The appointment with the oncologist has been changed a couple of times now...she's on vacation for the holidays don't ya know. 
So I plod along in blissful ignorance of what is coming at me; the only shreds of information I got via a poorly connected international phone call from her nurse when I was traveling for work.
Here's what I gleaned:

• they don't usually radiate the liver
• surgery is not an option, but the "why" would need to be addressed by the doc
• radiation to the pelvis is questionnable, since I've already had so much in that area.
• more chemo is probably in my future

Everything I read about vaginal cancer that has metastisized to the liver is pretty grim.  It's somewhat surreal; I feel fine.  How can I be in the shrinking percentages as far as survival goes?  How can this be happening to me? 
I still haven't stopped and taken the time to seriously contemplate my mortality.
Still working towards a huge deadline/project/goal at work, wondering how I'd going to fit chemo into my 12 hour days.
Still working on raising that teenager; wondering how she will grow up to be a successful and happy adult without me around to guide her...
Geez, this cancer stuff sucks.

The other shoe

So PET scans are an annual event now....recently had the 2012 occasion only to hear the following day (shocking, I know...) from my oncologists' office.  Wanted to see me earlier than scheduled to review the report from the radiologist.  I'm thinking "this can't be good", but never called them back.  Didn't have time to reschedule on the day they wanted me to come in.  I guess avoidance isn't going to work; her nurse called me the day after to explain, in a kind and gentle manner, that there were, and I quote..."2 areas lighting up....one at the top of the vagina and another on the liver." 
Next up:  CT guided liver biopsy.  You can't make this stuff up.
All I could think was "Fuck, I don't have time for this...."

Farewell Carol

When I first started down the cancer road, I was consumed with just getting through it--making it to appointments, working, managing the demands of everyday home life; just the usual stuff with the added inconvenience of cancer in the mix.  Looking up medical information on line was overwhelming and exhausting--conflicting information and not enough detail for me.  I gave it up or just didn't have time or energy for it...don't really remember which.

When I came out on the other side of treatments, alive and (fairly) well, I figured out I needed to deal with NOT having cancer.  I thought more about it later than I did during the low points of the experience.  I started this blog around that time--mostly because there was very little information or personal experience on the web specific to the treatment, the emotions, the survival of vaginal cancer patients.  I had a deep desire to put my story out there to help others who were in the same boat-- I wanted to provide real life, down to earth information that someone out there could relate to; wanted to be able to help by providing some insights into what to expect. Digging into this personal side of cancer, specifically vaginal cancer, led me to the blog of another vaginal cancer fighter.  I've been reading her blog ever since.  Carol had neuro endocrine small cell cancer of the vagina which spread to her lungs, liver, lymph nodes and bones.  She also had probably the best sense of humor found in a cancer patient--ever.  I don't know her personally; just know that her blog was a delight to read.  A great outlook on life (and death), a pretty funny family along for the ride, and an ability to see light and beauty in her darkest days. Living life and crossing things off the bucket list to the end.

Rest in peace Carol, and thanks for your words.

http://confessionsofacancerpatient.blogspot.com/